Brown and Pink Polka Dots : RMH and GI

Its been a busy but productive couple of days.

Yesterday later morning we headed to RMH. With some of our appointments we always plan that there might be more then just the appointment planned. GI is one of those. Jilli had a habit for a while of going to a GI appointment and getting admitted or them taking 4 hours and requiring extra stuff of us while we were there. With it deciding to be winter again in Wisconsin we decided the heading to RM Tuesday was the best plan and then if any curve balls were added to the plan we were good. Thankfully, no curve balls and everything went as planned today.

Yesterday we got to RMH and we checked in. While checking in one of the managers asked Jilli what she was going to look for in the magic room. Jilli said the Peppa Pig camper van. Jilli has wanted the camper van since Christmas but we told her she got plenty of toys for Christmas we were not buying her the camper van. Since then every time we go to the store when we pass by the camper van she would calmly say "Thats the camper van, I don't have it, its on my wish list, maybe it will be in the magic room someday." She would leave it at that. She didn't ask for it. There was never any begging. She just states the facts and moved on. Well after we got checked in the girls went and hung out with Holly while Kirk and I unloaded our car (I was thankful for the help). When Kirk and I were headed to the car the manager came up to me and said there was something in the magic room Jilli loves and asked if we were headed down there soon (when you check into rmh they give each child a token to the magic room. It gets them one entrance while they are there and they get to pick out one toy and one book, typically a volunteer takes you down to the magic room) I told her that as soon as the car was unloaded we would head down (she wanted to make sure no one else went down before us). We unloaded the car and then we grabbed the girls and Nate and headed to the desk to ask for a volunteer to take us down. The manager said she would take us down herself so we headed down the the magic room. We got in there and sitting on the shelf was the Peppa Pig camper van! Jilli was so excited! It was so sweet of the manager to do that for Jilli! Lydia picked out a Little People pet store. She was so excited when she saw it she squealed!

The girls then played with Coji with Nate for a little bit and then we headed to the room and Lydia took a nap. At 5:00 they had some people come in and they had multiple VR headsets. Jilli and Nate were excited! Brent got to RMH and helped Jilli to do the one VR. They had a blast. Then we headed to dinner. One of the women serving dinner uses a wheelchair and that was amazing to Jillian. The woman was so sweet and came over and talked to Jilli and played with her. Jilli talked to her about wheelchairs. Just talking to an adult with a wheelchair was amazing for her! We then headed to art therapy. She was so excited to see the art therapist. Jilli and grandma went shopping and got some new art supplies for the art room and Jilli was so excited to give them to Ms Holly! Art therapy was all full of kids Jilli's age (the big kids were still playing with the VR stuff) and they pretended to be dinosaurs. They traced, cut out and colored dinos! Jilli loved it. Jilli and Nate then played with their Cojis again and then headed to bed.

This morning we got up and headed to GI. Lydia's weight is looking good. Her weight for length had gotten very out of proportioned for a while but is starting to level out. Lydia does need more fluid in her diet though so we are going to start mixing 2oz of Pedialyte into her formula mixture to give her extra electrolytes and fluids. She also said that while we are at Disney to run the girls on water or Pedialyte during the times they are not getting their formula so they don't get dehydrated in the heat.

The nurse came in and smelled Lydia's stomach drainage. Of course today it didn't smell much but I told them about how on Monday it smelled so strong people could smell it walking past Lydia. The nurse said she would talk to the dr but she had never smelled anything like that before.

The dr came in with a student. The student walked in and said that he thought we had met before. I recognized him to but was not sure from what around the hospital. The dr commented that it was sad the random students knew us because we are all over. We all laughed. We talked about the smell. We decided to try Lydia on Flagyl to see if that helps. If not we have a plan. We are also going to start Lydia on the same laxative as Jillian because we know it works for what they have going on. We are going to start a probiotic in Lydia as well. Jilli has been on one for a long time and we feel that it has helped. We also talked about starting Lydia on the mito cocktail when she turns one (Jilli is already on it)

She asked about overall diagnosis and we talked about genetics. I told her the neruomusular is looking at doing another muscle biopsy on Jilli and do them every so often to watch for deterioration... the GI dr looked at me and "no, there will be no deterioration" our GI roots for our girls so much. She has been around Jilli since she was 13mo old and has been one of her biggest medical advocates. She is invested in my kids and her comment of no deterioration was a true deep want for there to not be any deterioration because I think it would be hard on her too if the girls start to have more muscle deterioration. She also asked me if we were having any more kids... we laughed and I said no!

We then talked about tube brands. I explained my frustrations to her. She said she would contact people and she would see what we could do because she agreed that an AMT tube for my girls is a better plan.

We then headed back to rmh. The girls played with Nate while I cleaned the room and then we headed home. We had a meeting at church tonight and on the way there the manager of IR (not the head guy we find frustrating) called me. She said the our GI had sent her a message about the tube brands and she was calling to talk to me about the brands. It was a very productive conversation were she listened to what I had to say, she understood where I was coming from and agreed to do the right thing for my kids. She apologized that I have two kids with two different tube brands and that it should have been thought out better. She said she does not understand why they put a 16fr in Lydia when they have 14fr (mic key tubes smallest size is 16fr but AMT is 14ft) especially in a baby that we were bending the 10kg rule for. She agreed with my worry about the ports and the fact the the anti reflux valve on Lydia's is already broken. She said that at next tube change out that we would switch Lydia to a 14fr tube and they would make sure that they have 14fr AMT g-jet tubes on hand for my girls!!!! She is also going to look into the brand switch more and look into why they can't carry both brands and use what works best for each individual child. This is awesome, not just for my kids but for all the kids they serve! I had a huge smile on my face when we got off the phone! This is what productive advocacy looks like. There was no screaming, yelling or name calling. There was productive conversations, and providing facts and observations. I talked to the people I needed to talk to and took the proper steps. It doesn't always work but this is one of those times where working hard at this really paid off and hopefully this will help other children too! I know something like tube brands might sound small and silly but I feel like this was a huge win for my children and I am thankful for the professionals that worked with me to make it happen!

So the last two days have been busy but they have been good! The girls both had a great time at rmh and we have a good plan for Lydia from a GI standpoint. I like plans and I am happy that as a team we were able to make one today to help Lydia with several of the things that she is having a hard time with right now. A very productive few days!